personal journey with lyme disease

ABCs of Lyme (N-Z) November 7, 2017

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 3:57 pm
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N is for my Naturopathic doctor.  She considers the whole person – body, mind, spirit and emotions – to promote optimal health.  She uses traditional and alternative therapies to treat my Lyme disease and co-infections.  She is amazing!

O is for Opioids.  JUST SAY NO, please.  The Opioid Crisis scares me.  I know pain well.  I know all too well the pain of Lyme and co-infections.  I know the pain involved in treating Lyme and co-infections.  My first Lyme doctor said he didn’t like prescribing pain meds as it would mask too many things; new symptoms, herx pain and improvement.  I agreed and still do even when I had to have part of my jaw bone chiseled out, when bone pain wakes me and when I broke my ankle this summer.  I choose heat, ice, massage, Reiki, exercise, the chiropractor and the occasional Tylenol or Motrin.

P is for Penicillin injections.  The original antibiotic still works well in the treatment of Lyme.  The shots are not fun, but I’ve had worse…

Q is for Quiet.  I just want my brain to be quiet.  I want spoons not to clang in coffee mugs, dishes to be silent when being stacked, alarms not to sound like alarms, phones to ring silently and people not to look at me so loudly.

R is for Rifampin.  One of the few antibiotics to cross the blood/barrier brain and also one of the nastiest to land in your body.  IV Rifampin works beautifully as it bypasses your gut (oral Rifampin wreaks havoc on your GI track).  The herxing has no description, well, maybe like Hell.  It cleared my brain fog, the inability to understand simple instructions, comprehension issues, eye problems and the head pain.  The fact that there was suddenly a shortage of IV Rifampin supports all the conspiracy theorists that believe the Government doesn’t want us to get better.  It is a cheap, inexpensive drug that works.  This is not the first drug for Lyme treatment that has had a sudden “shortage.”

S is for Steroids.  Another huge NO! to steroids.  They are like “crack” to spirochetes.  I spiraled out of control when I was put on steroids for my herniated disks and was unaware that I had Lyme.  These little bastards multiplied so fast that I was having trouble with coordination in less than a week’s time.  That was in 2004 and it wasn’t until 2008 that Lyme was confirmed.

T is for The Spoon Theory ( yeah, I cheated there, but both S words are important).  If you are not familiar with it, here is one of many links: https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.  I also found another link by someone who found and explained the flaw in the original article: https://themighty.com/2016/05/why-the-spoon-theory-doesnt-fit-my-life/.  Read them, share them.

U is for Ugly.  Diseases aren’t known for being pretty, but Lyme and co-infections take ugly to a whole other level.  Hair loss, rashes, cysts, lesions, stretch marks, weight loss, weight gain, tooth loss, fungi, parasites, vomiting, diarrhea, tics, tremors, seizures, strokes, burns, bruises, cuts and broken bones (from balance issues and brain fog), scars from: ports, IV lines, gall bladder removal and appendectomies just to name a few.

V is for Validation.  Even after all this time, I need validation.  I still love to hear my hubby tell me I look like crap because then I know I am not imagining how bad I feel.  Lab values out of control? Super!  Another validation of why I feel so sick.  Medication kicking my ass?  Wow, I really am herxing so that means I am really sick.  I am also thrilled to get validation for a delicious dinner, for a good work out at the gym or for a blog I wrote (hint, hint).

W is for Water.  Seriously, you need to drink at least half your body weight in water each day to flush out toxins.  There are more methods for detox, but if you can only afford water, reap it’s benefits!  Soak in it with some Epsom salts, baking soda and Apple Cider Vinegar.  Do a foot bath with the same ingredients.  Drink, drink, drink.

X is for Xerostomia.  Dry mouth.  What?  I needed an X word and with all the meds and supplements we take, lots of us have dry mouth.  Biotene makes an oral rinse for dry mouth and, Thank God, it works.  Have dry lips?  That’s Xerochilia 🙂

Y is for You.  You are amazing, strong, resilient, intelligent and deserve to be treated with compassion and respect.

Z is for Zigzag.  That is how we navigate Lyme; you zig, the spirochetes zag.  We are all affected differently and we all respond to different treatment plans.  We are all striving to be well.  Be careful not to lecture on traditional versus holistic treatments.  Do not shame another person with Lyme for doing things you would not.  Lyme and co-infections respond based on cycles, die off and the weather.  That means we do, too.  There is no cure, so we are all left to our own devices to choose a path that allows us to feel alive.






The ABCs of Lyme November 6, 2017

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 11:01 am

A is for Avoidance.  This can be social avoidance or personal avoidance of dealing with what is right in front of you.  My home is full of avoidance right now.

B is for Beating Oneself Up for everything you think you should have done, could have done, could have done differently, should have known, should have seen coming or should have dealt with already.  This is me from the moment I wake up till I go to bed.

C is for the Courage to continue on every day hoping to feel better, making the right choices and accepting that you have a horrible disease, but you are still a valuable part of society.

D is for Denial.  Denial comes at you from every direction and began way back when you were trying to figure out why you felt so awful.  The medical field – DENIAL; insurance companies – DENIAL; family and friends – DENIAL till it finally makes you DENY that anything is really wrong.

E is for Effort.  The enormous effort it takes to get out of bed each day and hope that this day is better than yesterday and that tomorrow will be even better.

F is for Flare Ups.  The sooner you stop trying to pinpoint the “why” of a flare up, the better.  Examples: is it the weather, is there a full moon, is it my Lyme cycle, is it because I went to the dentist, is it because I stayed up too late or got up too early, did I eat the wrong thing, did I not drink enough water, did I forget a supplement, did I up an herbal treatment, did I start a new medication, am I STRESSED?  Who wouldn’t be with just that short list of reasons?

G is for Grace.  We exemplify Grace by going out into the world each day and performing tasks with everyone else as if we are all the same.  People in stores, on the highway and at the gym don’t know that I am having an anxiety attack at the thought of the exertion mentally and physically to accomplish what they do without a second thought.

H is for Happiness.  Yep, I said Happiness.  I look for it everywhere.  Maybe you thought I was going to say Health, maybe I should have, but I went with the first H word that popped into my head.  Here are a few things (other than family and friends) that make me happy: music, books, baking, sunrise, sunset, snow, trees swaying in the wind, squirrels running through the trees, flowers blooming, the gym, the library, walks outside, thunder and lightning and dancing.

I is for Indescribable.  I don’t know about you, but I cannot begin to put into words the pain of Lyme disease.  If it is not a headache, it is a muscle.  If not a muscle, it is a tendon; maybe a joint or a limb or two limbs or your spine or your feet or fingers or your SKIN.

J is for Justice.  There needs to be accountability for the powers that allow Lyme disease to continue to disable and cause the death of so many.  I would not wish this on my worst enemy.

K is for Ketogenic diet.  Cutting out sugar and grains has changed me in such a positive way.  I no longer carry 50 pounds of inflammation weight and I do not have cravings.

L is for LDI (low dose immunotherapy).  I started LDI last year and am still on the smallest possible dose spread out over months instead of 6-8 weeks, but I feel hopeful that this will help my body fight the Lyme.

M is for Mindfulness.  This is “a mental state achieved by focusing one’s awareness on the present moment, while calmly acknowledging and accepting one’s feelings, thoughts, and bodily sensations, used as a therapeutic technique”.  I don’t know if I will ever perfect this, but I continue to try.

N-Z tomorrow.  Peace


With Lyme, all you can do is try March 8, 2013

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 6:30 pm

With Lyme, all you can do is try.


TA DA March 7, 2013

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 7:11 am
Tags: , ,

Look at me, only 12 hours since the last post!  Things to be happy about already:  my dog did not pee on the kitchen floor, it’s snowing, I don’t have to shovel or go anywhere today and I love my haircut!  Just a simple gal.

I’m a little disappointed I didn’t sleep better last night as that was my last Vicoden from my root canal a few weeks ago and I had been very happy to sleep a solid six hours for the first time in YEARS.  It’s my own fault (my mind’s fault really) as my PICC line is irritated looking and that makes me nervous which makes me think that maybe something is up again with the tooth that had the root canal as this is how it started last time.  Big time infection in my mouth was the result even though I was premedicated with 2000mg of Amoxicillin, had antibiotics placed in the site of the procedure and was/am on 500mg IV Azithromax daily.  Of course, I don’t have a temperature (it’s at it’s usual 96.2), so I will just put heat on my PICC line site and keep an eye on it.

Oral spirochetes are a bitch, plain and simple.  They invade an injured site in the mouth like a dog with a new bone. The following is an excerpt from a public health site regarding just how oral spirochetes attack (I like their reference to multiply like rabbits more than a dog with a new bone – so be it):

A focal infection is a local infection that expands to incorporate the whole quadrant, then the whole side of the mouth and eventually can cross the midline to incorporate the other side. Basically, the theory says the oral cavity is able to generate particularly nasty toxins that poison the body when you have had a root canal or a tooth extracted. Most dentists still do not understand the Focal Theory; it was studied more in Europe than here. Dr. Weston Price’s great contribution was the discovery that focal infection bacteria are polymorphic, meaning they mutate and adapt and multiply like rabbits in the three miles of dentin tubules that emanate from every tooth. The bacteria become smaller and anaerobic – they can now live without oxygen. They also become more virulent, and their toxins more toxic. Root canals and old extractions are common focal infection sites. 

When you have a root canal, a dead tooth is left in the mouth. The dead tooth lacks a blood supply to its interior. Antibiotics circulating in the bloodstream have no way to penetrate this dead tissue. Over time, the material packed inside the dead tooth shrinks a bit. Now bacteria come in and morph. The tooth has both bacteria and toxins as a result of being dead for so many years and these toxins are infiltrating into the bloodstream. 

In extraction sites, the healing may not take place correctly. If the healing is incorrect, the space can fill in with fatty tissue, dead bone, improper bone, or it can fill in with infected material. All of these processes are wrong and the organ associated with that extraction site will always show this improper healing. The remedy is to clean out the socket, debride it, and remove the ligament that holds the tooth in as well as the dense bony lining of the socket. The other important factor is cleaning up the quadrant (at least) of the mouth where the extraction was performed – cleaning up all metal and any other extraction sites. This is the best way to assure proper healing from extractions. 
Toxins from focal site infections are highly virulent and they tend to go to the organ associated with the meridian upon which that tooth lies. Over time, the toxins’ assault will change the genetics of the organ. However, it has been found that upon proper extraction of a dead tooth and proper treatment of an extraction site, the organ will return to its normal genetics. Bob Jones, an engineer, recently did substantial genetic testing which demonstrated the ability of organs to right themselves.

Did you get all that?  It’s funny as I had a root canal done a few years back before I realized any of this and ended up with a super infection and the molar had to be pulled.  I was put on strong antibiotics, but a few days later I was back in as I felt bone sticking out.  Just as it states above, my jaw bone had protruded and I had the great pleasure of having that carved out.  My mother always said I had to be different.

So now I am left to wonder if I should have just had them pull this molar, too.  Am I just in for more trouble leaving a piece of a dead tooth in my mouth covered with a crown?  I guess I will find out on March 19th when I go back to have the permanent crown put on and we see how the site looks at that time.  Of course, I have a nice metal filling in the molar next to it that probably isn’t helping either, but money is always a factor even with dental insurance.  I am going to try and hold onto this tooth as I am rather attached to them and don’t want another gap in my mouth.  Wish me luck and hope you ate before you read this.  Bet you want to go brush those teeth again, don’t you?


VALIDATION December 15, 2011

Filed under: Late Stage Lyme Disease — iammorethanlyme @ 1:40 pm

OK, so today I am 49 and by now I expected to have run a few marathons, still be working and able to go where I want to when I want to – but we know that hasn’t happened because of Late Stage Lyme.

I named this post VALIDATION because anyone who has been chronically ill and constantly ignored by the medical community at large is aware of how important it is to have someone say, “Hey, you’re not crazy, you are truly sick and have been for a long time”.  That happened to me in February 2008 when I saw a covering internist when I thought I had a blood clot in my calf.  I showed up at his office in leg braces, with a walker and wearing sunglasses.  He asked what was wrong with me and I told him that apparently I was crazy as that is what all the specialists could come up with after multiple tests.  He told me I wasn’t crazy and that he believed he knew exactly what I had – Lyme disease.  I had the necessary blood work done, went and had the blood clot ruled out and went home.  It wasn’t long before I got a call that I indeed had Lyme, but the internist wanted me to see a LLMD (Lyme Literate Medical Doctor) in Connecticut for treatment.  That was validation #1.

My husband, Dave, and I wait over two months to get an appointment with the LLMD.  We then drive 3 1/2 hours to see him.  He spends almost two hours with us going over notes, labs, examining me and said that just from a clinical stand point I was one of the sickest patients he had seen in his 13 years of practice.  Not good news, but validation #2.  Each trip to see him cost $400 out-of-pocket as insurance doesn’t cover visits.  We also had to stay at a motel each time as 3 1/2 hours in the car caused me so much pain that I could barely get out of the car.  More money.  We ate cheap.  We saw him every 8 – 10 weeks over three years.  Then there were all the medications and lab tests which left us with co-pays and some tests not covered.  It is very difficult to treat a disease that is denied by the medical community.

Now I am jumping ahead to yesterday. (My LLMD has been on medical leave since April and I have not talked to him since June, so I was seeing my internist’s partner who has a biochemistry disease and felt comfortable seeing me while I waited to see a Lyme literate neurologist in Massachusetts.)  I started seeing her in July and had to have as many old records and tests and medications available for her to review that I was overwhelmed.  Then came retesting – another Brain MRI to compare to one in 2008, and EMG and nerve conduction test and a neuro-cognitive test done with just me and a computer in a room, plus another 14 tubes of blood.

OK – I’m almost at yesterday.  It was my follow-up to go over all the results.  It looked like it would be a waste of a visit as I had called to make sure they had received all my old records and the office finally got back to me the day before to say they had not received them.  So at 3 pm I am frantically trying to get certain items faxed in time.  To say I was beside myself would be an understatement.  I was tired of disappointment – I almost canceled.

Yesterday we headed out the door at 8 am ready to at least get the test results this doctor had done. We arrived to find out that the faxes had arrived and I felt a sense of relief as she would be able to compare prior results.  Now bear in mind that before I saw this doctor, I had seen neurologists at Tufts and Lahey Clinic for 3 years.  Here come more VALIDATIONS that I’m not even going to number.  My Lyme blood work showed SIX positive bands for lyme – the neurologist dismissed it as did his infectious disease doctor.  My Brain MRI from 2008 showed lesions, but were dismissed; my recent MRI showed that the lesions had not grown in number – meds are doing their job.  My spinal tap showed a protein enzyme that Lahey Clinic ignored and they also ignored me when I told them I actually felt better after a spinal tap (how many people say that).  It turns out that I have swelling of the roots of my nerves at the base of my neck – a type of encephalopathy and that is why the removal of fluid felt better.  Of course, they dismissed this, too.  My EMGs and nerve conduction tests showed left-sided weakness, but Lahey did not think much of it.  My neuro-cognitive testing showed significant problems in the cortical part of the brain and diminished cognitive abilities – SHOCK AND AWE!  Just spend a day with me and you will be entertained.  There were other positive parts to the visit and we ended with me agreeing to go on high-dose Doxycycline for three months along with the Mepron, Biaxin, Plaquenil and Low-Dose Naltrexone that I am already on.  I need to get vitamin B-12 shots, get my vitamin D level past a dangerously low-level even though I try to remember to take high doses, and go for IV’s of other vitamins and Glutathione (a wonderful healing supplement that reduces stress in your body).  The last things on the list are the hardest to do as I don’t drive and there are only so many people available to help out and I am tired of asking.

To think that this all started because of a misdiagnosis over 18 years ago is appalling – that was my first bout of Lyme induced arthritis.  To look back and think of the indicators that I ignored because I figured I was a busy Mom of 3, working, taking care of relatives, doing all the wife things and was just tired and sore because of life.  I’m angry that I have basically lost my 40’s to this disease, to know that I’ll never be 100% and to know that I will relapse because of the severity of my illness – you just never know when that will happen or how long it will last.  I’ve missed being a wife and the type of mother I always was: baking, sewing, driving kids around – I think I deserve it back and that is what keeps me getting out of bed every day, taking my antibiotics and going to physical therapy.  That and the support of my family and friends.  Happy Birthday to me!